Med Suggestions?

[joeylittle]

I would just delete this entire thread if I knew how, because I guess I'm not going to get any answers, but instead just some debates on how I should be treated differently from others because I suffered a physical trauma. I guess it would've been more beneficial to not ask any questions and just browse the board instead. My honesty really doesn't do much for me anymore.

Thanks for sharing your full diagnostic profile. It is helpful - because you are managing a lot of things.

I have TBI, and I know what you mean about the stigma - though I think mostly, it's just people being really clear that their experience with a medication is only based on one or 2 diagnoses. I mean, having bipolar (for instance) puts you into a more limited range of what you can or cannot take, psychotropically.

So I don't think anyone is saying anything except 'wow, that's complicated' - which it is. Doesn't mean you're being discriminated against.

My thoughts/experiences: remember that there really is no PTSD medication - there's just deciding which PTSD symptoms could be relieved through what. Ideally, those meds double-team with other diagnoses. So I think it's worth examining your vybriid/saphiris combo and seeing if there's a better approach to those symptoms that would ALSO address sleep and maybe better address anxiety.

I keep coming up with how the big complaints about saphiris are weight gain and difficulty sleeping. Maybe it's worth trying Latuda instead? It's kind of awesome - more weight-neutral, effective for depression in lower doses, bipolar in mid, and schizophrenia in high. Just means it's very tweakable.

Not sure the vybriid is contributing enough, if it's just there for depression. But latuda is also a good adjunct...might make vybriid more effective.

Specifically for anger/sleep - I hate to say it, but til you get thyroid sorted, you might want to focus more on sleep hygiene, liquid melatonin, and patience. I think the thyroid is more important, personally, and will be affecting your sleep and mood big-time.

Topomax - yep, dopomax - BUT, positive side effect: weight loss. (Just tossing that in for consideration)

Totally random: ever consider lithium? It's the gold standard for multi-symptom mood disorders, inc bipolar. Yes, weight gain. But, so old, well-researched, well understood.

Cymbalta? Also used for neuralgic pain....and in my experience a great anti-depressant AND anti-anxiety med.

Just spitballing. Things I know well: cymbalta, Wellbutrin, abilify, lamictal, topomax, latuda, rexulti, Effexor, clonazepam, lorazepam, prazosin, Ritalin, I'm learning gabapentin now, and should be trying lithium (but am afraid of weight gain getting worse). Those are over the last 5 years. Treatment-resistant major depression, TBI (milder than yours I think, but with aphasia), PTSD.

Hope something in there was useful.

 

[ButransGirl]

Thanks for sharing your full diagnostic profile. It is helpful - because you are managing a lot of t...

Hi joey, thanks for the thoughtful reply.
The complaints about weight gain and Saphris are totally legit, you can add me to the list of those who agree. I'm only taking the smallest dosage of 2.5mg at bedtime. It actually knocks me out and keeps me asleep until early morning, which is a stark contrast to what my night is like without medication. Narcoleptics do NOT sleep well. We may sleep at inappropriate times, but it's awful sleep, which is why we're so tired. Interesting, right? Anyhow, the Saphris also helps my anxiety just a little bit at this dosage. At 10mgs, I really don't have anxiety, but you know, I'd be over-medicated and unable to enjoy life, plus I gain a ton of weight. I have wondered if the Saphris has caused this weight gain, and my psychiatrist said it wouldn't at this low of a dose, and I guess I just hope she's right and keep on taking it because it allows me to sleep at night and keeps any manic stuff from happening. Unfortunately, most bipolar meds do make you fat. Except good ole Dopamax. How did you do on that? I couldn't function on it. I was constantly dropping things, couldn't find my words even moreso than usual. It was embarrassing. I've tried it a few times though, bc i keep going back to wanting something that won't cause weight gain. I think I should leave it alone from now on.

I'm glad you like Latuda. There's some weird thing with my muscles and nerves that I get a lot of tingly sensations and cramping, and a lot of antipsychotics make it worse. Latuda is one of them. I don't know if this is an illness causing this or if it's just damage to my brain from being on Geodon for so many years. I have been through the ringer with med trials since I was 17 years old. I have been on Lithium and I blew up like a balloon and it didn't go well with my PCOS hormonal imbalance. It actually caused me to break out in cystic acne so badly that people thought I had a rash and were constantly asking me what was wrong with my face. It left me with a face full of nasty scars. I stay away from Depakote for the same reason.

I'm getting blood taken this week, so I should know more about my thyroid soon. I'm kinda afraid something is off with my hormones because of the brain injury. like the growth hormone or something. idk, anything can get damaged from anoxia, it's literally the motherboard and processor, etc, of the being. my sleep at night is ok with the saphris. without it, i do the narcolepsy thing and dream the entire night and then fall asleep on and off the next day. The narcolepsy is there whether my thyroid is great or not, unfortunately. Something I've come to terms with because it's just how it's been for a while and at least now I have treatment for it.

I've thought about Cymbalta as well bc of the pain/mood/anxiety relief combo. It's definitely worth discussing with my doc. My depression, which I've constantly had for many years, has been lifted since I started Viibryd, but I think it's getting to the point where it may be worth trying a switch over to Cymbalta. I have to take stomach medicine to treat the side effects of Viibryd anyhow, so it'd be nice to ditch it.

I have absolutely no experience with Rexulti so I know it is newer than ten years old. I will have to research that one. I have experience with the rest and then some. I am definitely going to ask my dr about Prazosin for flashbacks. Just for a little while until they calm down and I can accept more of what happened to me. I was prescribed it for a short time, 10 pills shortly after I got out of the hospital, and I was so revved up at that point that I didn't get any effect. I stopped taking it and then about 2 months later, I took one and it did help. It would be nice to just take that and only take Xanax for extenuating circumstances that are rarer than 15x a month. I don't like the idea of being on addictive meds, esp not benzos because when I've been taken off them in the past, the withdrawal was the most terrible thing I'd ever experienced.

I think most have a milder tbi than me, although of course not all. the hospital staff were calling me their miracle baby. i wasn't expected to live, and i certainly wasn't expected to be able to walk and talk again, and most definitely wasn't expected to be able to return to my home to live by myself. I was clinically dead. BUT, I had a mild tbi in 2009 and I can say that while I didn't need to relearn how to do anything during that time, my memory and aphasia problems were enough to severely disrupt my life, relationships and self-esteem. So, any brain injury can severely impact one's life is what I'm saying. It was really hard accepting that I could never find my words. Now, I have even more trouble finding words, but it should get better with time. I really wish my memory was more damaged this time so I wouldn't remember being on the vent in the ICU. During that time, I couldn't remember minute to minute, but unfortunately some connections were still intact and I remember it all now, however jumbled and confusing it all is. Of course I wouldn't want to still have really bad short term memory. I've totally been derailed by my thoughts thinking of truma. I'd fix it but it's 3am and I need to go to bed soon. Anyhow, I feel for you, and don't ever discount your struggle bc someone seems like they had a more severe brain injury- pain is pain.

anyhow, goodnight. thanks for your response. i think the cymbalta is worth bringing up to my dr. i have to look it up but if its a bit similar to viibryd, i should be golden. i think viibryd is an original type med though, like creates serotonin rather than just does reuptake. dr will explain or i'll read some medical stuff online.

 

[ButransGirl]

wow, i sure wrote a book! my apologies. i have a lot of trouble being concise these days.:eek:

 

[joeylittle]

Your reply makes sense, @ButransGirl.

If I remember right, fundamentally vybriid is an SSRI and cymbalta is an SNRI, which in my opinion just makes it better - but I'm biased. One thing for sure: cymbalta now shows to basically only work for 4/5 years, and then it becomes placebo for majority of users. But who knows where you'll be in 5 years?

Sounds like saphiris is an anchor drug.

You can use topomax in lower doses (the depression doseage) and be less dopey. But I stopped it too because of too much dopey.

Words do get better. I promise. Keep using them. Do whatever rehab they give you. Do anything with words, read out loud, listen to book on tape and follow along, do acrostics, crosswords, just keep going. I only have trouble now when I'm really really tired or really really upset. Or when the depression stops responding to the meds, is another time, now.

Hang in there.

 

[EveHarrington]

I wouldn't take what @Lucycat said as being unwelcoming.

I can understand why i...

Then what is the point of this forum if we are only going to be told to go talk to our doctor because he/she knows best?

Knowledge is power. Please don't shame people for being pro-active about their health and educating themselves about possible medications to take. It's not like we go to a doctor and simply tell him what we want. (If this was the case I'd be demanding oxy scripts and flipping a fine profit! Lol. KIDDING!) We are educating ourselves in advance so that we can have an active role in recovery. (OP please correct me if I am wrong.) The doctor writes a script based on what he thinks is best along with the patients input. If the doc makes a mistake about drug interaction, the pharmacist will check it.

I'm not sure I like this "correction" tone of the forum. If someone doesn't have any positive input, why step in and tell them they are flat out wrong in their quest for knowledge? Why shame someone?

I realize that good doctors are hard to find. I feel bad for those out there who have the typical 5-10 minute med check with a doctor who doesn't care about his patients opinion. From what I'm gathering, both the OP and I have decent doctors who value our input. Instead of trying to knock us down because we have doctors who listen to us, maybe you should reassess your own treatment providers and wonder why they don't let you interact with them? It's something to ponder. In short, don't knock something just because you don't understand it or have no experience with it, ok?

 

[Neverthesame]

Please don't shame people for being pro-active about their health

I'm not shaming anyone.
Nor do I think blind obedience to a doctor is good.

It's not like we go to a doctor and simply tell him what we wan

The way the first post was worded, made it seem this way. Clearly I was in error. If you look up a few posts, you will see that I apologised.

I'm not sure I like this "correction" tone of the forum

I don't understand what you mean. The only person I corrected in this thread, was me.

Instead of trying to knock us down

Again, I don't understand where I did this. I gave my opinion, with reasons why I felt that way. How is that knocking anyone down?

Nobody is under any obligation to listen to anything I say. If anyone finds helpful, great. If not, great.

why step in and tell them they are flat out wrong in their quest for knowledge? Why shame someone?

I didn't. I suggested they get more knowledge.

when you go in to see your doctor, remember that you have the final word on what you take. So try to keep an open mind, ask lots of questions and of course fully research everything you are prescribed.

See?

I saw a point in Lucy's post that I felt was worth elaborating on. From a viewpoint that turned out to be incorrect. Which I again apologised for.

Anyways. Sorry for upsetting you.

No hard feelings from me. Take care.

 

[Lucycat]

@ButransGirl @EveHarrington
I apologise to you both if I came across as unwelcoming and rude. I do understand there are cultural differences at play here.

I am actually a health professional as well as a CPTSD sufferer, and medicine safety is something I am passionate about. Sometimes it feels to me that people are as casual about medication as they are about their choice of brand of cornflakes. I don't mean that flippantly, I mean that medication is such a hugely risky and important topic that it deserves to be treated with respect. For me that means using the specialist services available, such as speaking with pharmacists and those who are experts in the field.

With the greatest of respect, this is a mental health forum, and we are all random strangers to each other. Of course there is a common interest, but I fear people taking advice from anonymous members on such important things as medication when they have no idea as to the accuracy or authenticity of such advice.

 

[joeylittle]

I'm not sure I like this "correction" tone of the forum. If someone doesn't have any positive input, why step in and tell them they are flat out wrong in their quest for knowledge? Why shame someone?

Its hard to read tone on the Internet.

It's extra hard to read tone across borders. British are often more economical with language, which makes it appear brusque, which can lead to someone assuming negative tone. People who are ESL have different syntax and sometimes so much so that the meaning can be missed.

I don't see much corrective tone; I see people sometimes reading tone.

I think what we all have in common in this sub-forum is interest in and experience with psychotropic medication - which is a very imprecise science.

I'd worry if a medication thread didn't say 'also, talk to your doctor', when it's unclear whether or not that will happen.

 

[EveHarrington]

Its hard to read tone on the Internet.

It's extra hard to read tone across borders. British are of...

Not when it's tone as set by action. I'm not reading implied tone. Many times people have come up behind me to correct me, tell me that I'm just plain wrong. This does indeed set an unmistakable tone as indicated by deliberate action. Not just in this thread, not just in my medication thread, but all over. It's one thing to disagree, another animal when it's correcting someone and treating them like they are ignorant and don't know what they're doing. (People have even quoted me and laughed at me because they thought my opinion was wrong! Again, no assumptions being made.)

My thread, this thread-----there is no doubt we will be talking to our doctors, none at all. It's explicitly stated from the get go. "Talk to your doctor" responses are belittling as if we are so stupid that we didn't know we had to talk to our doctors in order to get these medications.

My issue is when someone repeatedly does the same upsetting thing to new members. I didn't stand up for myself when I received this treatment in my medication post, so that's why I'm standing up now. It's HARD to come to a forum and ask for help only to be told to go talk to your doctor. Technically we can extrapolate every single PTSD issue to needing this response. Every issue---go ask your therapist; go talk to your doctor (they know you best). At that point, there is no need for a forum. We are here for peer feedback. And in the case of wanting feedback as to what medications work, what are people assuming? That we are going to write the scripts ourselves? Peer feedback can be invaluable. I've found some of the best medications this way. It's saved me a lot of time because I didn't have to first try a lot of medications that don't work.

 

[joeylittle]

Its HARD to come to a forum and ask for help only to be told to go talk to your doctor.

For you, it was. And that makes this personal for you in a sharper way; not only you, but others with a similar experience.

No member here can restrict another member's expression. So the only things I want to point out are: you have a right to your full opinion. I have the right to challenge it, and you to challenge back. You can tell Lucy she's wrong, and you disagree - and you can give your own opinion the same weight. You do not need to defend others; they can do that. But yes, speak up for yourself!

It's a very interesting and important topic. I know for myself - and I swear I'm not saying this to be contrary - I find it so helpful when I hear 'and ask your doctor/tell your therapist - because I know I've been trying to solve the problem by myself without 'disturbing' them. I want to be the good student. Which sometimes isn't healthy for me.

Also, why peer support is great - because among the multiplicity of voices, someone can always find both their cohort and their challenger.

I very much agree with your statement about direct marketing and how it affects things in the US. I know my first psych gave me cymbalta because it was still under patent, he just got a bunch of samples, and it was give-away-a-drug-your-insurance-won't-pay-for-day. I'm lucky it was a good one for me. But he wasn't thinking about me so much as what was in his drawer that would probably work.

So yep - Information exchange, good thing. And we take what works, and leave the rest.

/thread jack.